Stories from the life of a strong woman with a sharp tongue and a warm heart.

08/02/2014

I have breast cancer. I can say that now without cringing. The cringy part - what to do about it - has kept me in a state of consternation since the diagnosis in May.

I have invasive lobular carcinoma. It does not form tumors with clean edges. It hides. It spreads like a river delta running over big rocks - no discernible pattern. It does not "image well" which means, no shit - they can't see it on most tests, including the new 3D Mammograms. What showed up as an 8mm tumor ended up exceeding 5.6 CM and they still didn't get it all. It is, as my wonderful surgeon said "Our Nemesis." I know from Nemeses. They can't be trusted - they require the big guns. So I got them all out.

I read studies; I researched; I spoke with Survivor Warriors and Fighting Warriors and medical experts of all kinds. I got some information about survival and infection rates and other important information in ways both direct and sneaky. My cancer is sneaky so I figured it was fair.

I had surgery in June - a partial mastectomy with sentinel node biopsies. Lymph nodes were clean. The margins were not. What that means is that there is more cancer in there - at least at the edges of where the existing cancer was removed. How do they get close but not get it all? I am quoting the Docs: "Pure Luck". That's right. They can't SEE the cancer in there. They can't TRACK the cancer in there. They just hack out part of your boob and hope for the best. I know that sounds terrible but it's the truth and I am telling it. THEY DO NOT KNOW. This is perhaps the toughest thing about The CANcer (you need to whisper it that way when you say it ;)). You have to accept that you will never know what caused it. You will never know why it picked you. You will never know where else it is lurking. For someone like me, who counts on finding answers and ways to FIX things via research, clinical thinking and brainpower, this is the ultimate nightmare scenario.

But at least I knew more about my enemy, so I set about learning as much as I could, given the meta limitations.

I had genetic testing done - my grove of family trees is full of cancer branches. But - HURRAY - I don't have either of the BRCA genes. Neither does one of my sisters - which is kickass news for the rest of the family including our daughters.

I had tests - lots of tests. I volunteered for every research project and clinical trial in the tri-state area - and I signed a consent for all of them back in May. One called. I ended up in a clinical trial for breast imaging - they are trying to find a better (and less expensive and less terrifying) option than MRIs, which tend to produce false positives. MRIs, in case you've never had the pleasure, are huge machines with a hole down the center - like a round coffin, closed and without the cushy lining. Okay - maybe that's a bit much - how about a water slide tube, except you can't move and there is nothing fun about it. Once they shove you in there, they proceed to bombard you with every irritating sound you can imagine. The sounds change, you can't anticipate what will come next, and if they had asked me to give up state secrets to make it stop, I would have.

The new technology is better - there is a new application of the 3-D mammogram imaging called contrast enhanced breast tomosynthesis. They inject a dye so they can better discern how different cells react. I also did a study using a machine designed for nuclear brain scans and bone scans. Fascinating - I was injected with radioactive isotopes designed specifically to react with breast tissue and then did extended mammogram images (10 minutes per image) from different angles.

The results came back: more cancer in my right breast. Nothing on the left. Okay. Knowledge is power.

In case you don't know me and haven't been following this, let me insert at this point that I went into this wanted a bi-lateral mastectomy. Because when there is something inside you trying to kill you, you want it OUT. GONE. OBLITERATED. Moderation? Screw that. Get that shit OUT.

My surgeon, Dr. Bonaventura, was patient with me. She told me from the beginning she would respect my decision. Then she showed me the studies, and the test results and the long-term survival rates. Over the course of the next couple of months, I came to agree with her motto: there is no reason to remove healthy tissue. One of the ways I finally got there was the grim realization that boobs are not just for feeding babies and sexing. They're not accessories that you can just pop off when you don't want them any more. They are part of your body and they contain lots of things that support the systematic operation of the whole shebang. In other words - they are not legos that can be removed and replaced with no problem.

Not everyone is lucky enough to have the options I have. Some of my dear ones really had no choice - if the cancer is a certain type, or has spread, or if your genetic tests come back positive, it's a no brainer - everything has got to go in order to prolong your life.

Does it infuriate me that - in all the years we've spent allegedly focused on breast cancer research that butchering ourselves is still the only option in some cases? You bet your ass it does. And the other treatment option - after ALL THIS TIME? Still poison (aka chemotherapy) - for some people that's worse than the butchering. But that is a blog for another day.

I could have more tissue taken from my right boob in an effort to get 'clean margins' - which means no traces of cancer outside the area they cut out. I ONLY have this option because I have big boobs. But then I would be looking at living through this every year because I KNOW -from the scans and the biology of this type of cancer - that there is more in there. We just don't know where it is yet.

So I am having a mastectomy on Tuesday morning. I am having it at the same surgical center as all of my other procedures - on an out-patient basis. My surgeon and anesthesiologist (who have been with me since this all started back in 2012) agreed that I am healthy and strong enough to try it this way. If there are complications, they will transport me to Magee. But I don't want to spend any more time in the hospital than I have to. Which is also another blog - or if you happen to know a nurse, just ask them. I will have a tube draining stuff post-op, which for some reason scares me more than anything. Another blog.

I keep looking at my boobs. They are in good shape, considering. Even the reconstructive surgeon was impressed. Told them I used to be a stripper. Which is NOT true. I cannot deny, however, any number of wet t-shirt victories I may have experienced.

They are real, and I have to admit, back in the day, they were, in fact, spectacular.

And now one of them has to go. This makes me very sad. Which is odd - because it's just a boob. It's not an eye or a brain or any of the things that operate the five senses or my ability to walk or talk or write or hit people in the face if necessary. Plus, I still have one that works. The right one doesn't work any more. And I am told by other Warriors that it probably never will. The previous surgery wrecked up the muscles and the nerves in there. So really - if it doesn't work, and it already resembles a road map of scars, what's the big whoop?

I don't know. But it's a whoop. It's an enraging, crying, cursing whoop that makes me unfit for human company right now. In a couple of days, the girls are going to be split up for good. But me? I will still be me. I am a better me than at any other point in my life. I endured a lot to stay me. I enjoyed a lot and laughed a lot and fought a lot and fixed a lot and gave a lot and took a lot from my family and friends to stay me.

When I was in my 20s, I was physically beautiful. If you didn't know me then, ask for a photo. I didn't really understand the potential of being physically beautiful - which is just as well - because that is some shallow stuff, using looks to get what you want. But in my 20s, I was a mess inside. Lots of reasons - nature, nurture, criminals, weaknesses - a zillion reasons.

Now, I am not beautiful on the outside. I am fat and scarred up and my hair is no longer long and glamorous - I have to wear glasses which I hate, I wear crocs and big shirts instead of FMPs and corsets and I haven't worn make up in a decade. But ME - inside me - where the important things are - compassion and love and fortitude and gratitude and sympathy and empathy and the ability to give? By the Grace of God, I am stunning. I am a beacon and a source of great love.

And no damn cancer is going to take ANY of that from ME.

I need to thank everyone for all of their prayers and support and implore you to keep it coming. Because without all of you, I would be in the fetal position under my desk. ;) Especially to other Warriors out there - whether you are in the Fight, or years out - remember - we fight together; we win together.

xo

Kathy

Someone did ask for photos and I tried to put them in a comment but it didn't work. So here is me circa 1980-1988 - I don't have very many on my computer but this should give you the general idea! :)

05/29/2014

Gentlemen - bear with me. This is an experience you need never endure. Unless, of course, you need a 'Bro' or a 'Mansierre' - depending on whether you prefer Cosmo Kramer or Frank Costanza's design.

Even on a good day, shopping for bras is a freak show that really strains logic. It ought to be simple. A number and a letter. Find a measuring tape, get the data, and choose a fabric and a color. If only.

Much like the elusive win at Bingo, finding the right combination of numbers and letters is a crapshoot in and of itself. Start with the fact that no two boobs are the same size. That's right, the girls are not identical twins. This is why you hear women refer to their boobs as 'Betty and Veronica' rather than 'the Boobsey Twins'. So right off the bat, the letters can be different. Start hacking away at either one and it's one of those logic puzzles where they just don't give you enough information to figure out whether the yellow car belongs in the blue garage.

Then we have the numbers. What a joke. Believe me when I tell you that although one would think numbers would provide a standard measure, one would be WRONG. A 36 at Victoria's Secret is not the same as a 36 at the Vanity Fair Outlet store. Needless to say, neither are the prices.

Most people cannot even agree where to measure. And so, as I learned a couple of years ago during my first tangle with breast cancer, finding a 'sports' bra in my size? It's a laugh riot.

The breast cancer surgical team will tell you that a sports bra is the best thing to wear after surgery. This makes perfect sense because the less bouncing around of the boob, the better. Better means less pain and faster healing. They say this as if sports bras of all sizes and shapes grow on some kind of retail boob tree. They do not.

Let's be honest - part of the problem is that they usually only make things for people who want to buy them and use them. My body has not been inclined to sports of any sanctioned type in decades. Basic economics: no demand for sportswear from fat people means no supply.

Forget regular retail stores - most don't go up to my size and the ones that do carry bras meant for entertainment or ornamentation, not squish factors. That's the other thing people don't say out loud about the sports bra. It's a squash device. That's how you keep the boobs still - you mush them in place - and gravity is a serious challenge - so the bigger the boob, the more necessary the squash.

Last time, I ended up with camisoles that had built-in shelf bras. But that was in the winter. Try even showing me a camisole in the summer and I will slap you silly. So the hunt began again. When I say I have tried on a hundred bras, believe it. Some cut off my oxygen supply. Some looked cute (if you can call something the size of a child's hammock cute) but had no support.

Finally I found something that will work - and here is the secret - find the right number and screw the letters. The ones I ended up with are advertised for all inclusive letters A-F. Can I tell you how hilarious that sounds? That's like asking all the members of the US Olympic track and field teams (men and women) to wear the same size shorts. An A person could use this bra as a full-body slingshot and an F person could wear it as a necklace - but neither could wear it as a bra. Lucky for me, I can.

So now I have four - 2 white, 1 cream and one black. Why the colors? Why not? They are all going to be ruined by the time I'm done with them any way. If they had red or pink, I would have chosen those. I was just delighted to finally find one that worked.

05/15/2014

Had my appointment with the surgeon yesterday and they gave me a binder - classic 3 ring style - with tons of information and room for me to insert my own stuff. I love this thing. Maybe it's all the years of school or a hint of OCD, but I love files and binders and all kinds of other organizational stuff. It makes me feel better. Why? Because knowledge is power.

[Note to GoT fans - nod to the Master of Whispers and Littlefinger and good thing we don't have that raving bitch Cersei around to change that dynamic, huh?]

Which is good, because this summer is not going to be all picnics and frolics. I will have surgery on June 17 and then 8 weeks of radiation 5 times a week. No idea about chemo or anything else until we get the surgical results. HEY - it could be much, much worse - compared to what many Warriors are going through, this is a freaking walk in the park. I'm not afraid and I trust my surgeon completely.

I went in expecting to discuss scheduling an MRI and genetic testing. I knew there was time because the pathology report showed the tumor was very slow growing (growth index of Ki-67 - 5% for those of you who unfortunately speak this language). I was also ready to push for a mastectomy rather than a lumpectomy.

After a long discussion with the PA and the Surgeon, and a review of more detailed pathology and current studies on MRIs, everything changed.

I have to point out that here in Pittsburgh, we are so blessed to have an amazing cancer center. Funded by the Hillman family (thank you) and supported by the University of Pittsburgh Cancer Institute (they do extensive research - including a study on my specific type of cancer that was just published in March) and UPMC, we have access to an incredible number of resources and a stunning amount of information. (A whole "Cancer Sleep Clinic" - watch this space for more on that).

[A note on MRIs - they used to be standard procedure in cases like mine. In a nutshell, the problem is that MRIs kick out a ton (85%) of false positives. Even with than in mind, if something shows up, they HAVE to biopsy it to make sure. This results in a lot of unnecessary biopsies and time lost. So docs are being much more circumspect about ordering them. Now back to our ongoing blog.]

I won't bore you with the details, but suffice it to say that after the discussion, the surgeon told me (with a smile, thank heaven) that she felt as if she'd just completed an oral exam. I also happened to glance ~cough~ at my own chart, and saw the note: "Lawyer but Funny". That may be my obit when the time comes.

Naturally, I took notes the entire time I was there (on a yellow pad that already has the 3-hole punch - yippee!) and they are in my Boob Binder, along with all the full pathology reports they printed out for me, and tons of other good stuff, including the secret code for the special bra store (another blog I'm sure).

SO - lumpectomy and surrounding tissue surgery June 17th followed by 8 weeks of radiation 5 times a week. Is that a lot? I have no clue, but I'm having lunch with Mary Alice tomorrow, and talking more with my Godmother later today. They both went through it. I will be taking notes.

While I'm in surgery, they will also do something called a Sentinal Node Bioposy. This involves glowy blue dye. If my lymph nodes light up like a smoking room in the '70s, they come out too. I am going to find a blacklight and an Elvis poster on velvet to prepare my boobs for the experience - they were much smaller in the 70s and probably don't remember.

I also need to mention that the surgeon said I have the 'perfect tumor' for a lumpectomy. My sister's response, which is undoubtedly reflective of the entire family: "Of course it is." ;)

Tons of improvements in the techniques even from 2 years ago, but more on that later. Here is the most stunning piece of information I heard yesterday: given the rate of growth and the size of the tumor, it has been in there, growing undetected for TEN YEARS. Ten. Years. Were they finally able to spot it because of its size (8mm) or because the 3D mammogram technology is that much better than the regular digital? Who knows. Here is what we DO know:

1. GET YOUR MAMMOGRAM

2. Please start praying - for those of us who say Novenas, the start date will be June 10.

3. This is not going to kill me. Not so long ago, that was not a certainty. Thanks to the Warriors who have battled before us, we have more information and better technology every single day. Support our Warriors - do what you can to help us find a cure.

05/10/2014

Long ago, in a generation far, far away, before there was 'an App for that' there was a pill. Oops - I should say The Pill. The Pill was a medical marvel - actual birth control that didn't depend on calendars, latex or anybody's rhythm or lack thereof. Side note: I could never hear a priest say 'rhythm method' without cracking up a little. Don't tell me that the theologians who make up these things don't have a sense of humor.

But back to The Pill. Great, great, great. They started using it for everything. Birth control? check. Acne? check. Heavy bleeding? check - and why the hell not? When I was 14 and suffering with heavy periods and cramps, my regular doc ( a pediatrician - not even an OB/GYN - never even saw one of those until I was 18) just put me on The Pill. Let me be clear that I was NOT sexually active. Birth control was not an issue for me in 1974. But I was on The Pill. Never thought twice - I was just happy I wasn't incapacitated for several days a month. Half the women I knew were on The Pill for one reason or another. And you can repeat that scenario in every town in every country where The Pill was available. We should have known it was too good to be true.

Because - uh oh - thirty or forty years later, SOMEBODY decided we'd better check in on the impact of all that straight up Estrogen on a couple generations of women. Keep in mind that there was no 'low dose' Pill at the beginning. I'm not even sure it's legal to prescribe the kind of hammer dosage they were passing out like Halloween candy back in the day.

You know the rest. Most traditional HRT came to a grinding halt. New protocols out the wazoo. Whew! Good thing we figured THAT out. Too bad it was TOO FUCKING LATE for most of us.

Talk to anyone in the Oncology business - cancer in the women of our generation is skyrocketing. One reason is obviously better detection - we are identifying cancer earlier - that's a good thing. But the other reason is the one nobody wants to admit. It's the The Pill's chickens coming home to roost in the form of nasty cells in our breasts, our ovaries and our cervixes (cervixi?).

Am I pissed about this? You bet your sweet bippy I'm pissed. Because we are supposed to have EXPERTS who protect us from this kind of nightmare. The FDA was created in 1906. You'd think four or five DECADES would have been enough time for them to get their act together.

Research on The Pill began in the early 1950s. It was approved for "severe mestrual disorders" in 1957. Quote from the PBS Need To Know article:

"1957: The FDA approves the pill, but only for severe menstrual disorders, not as a contraceptive. An unusually large number of women report severe menstrual disorders."

Despite some pretty troubling side effects from the trials (those were conveniently ignored) The Pill was approved for birth control in 1960. The year I was born. Also, the Pirates won the World Series. (For many of us in Pittsburgh, it seems like it's been that long since we've even SEEN action in a World Series - but I digress - and could someone PLEASE find us a decent starting pitcher rotation?)

So here we are in 2014. Our sisters are STILL dying from breast cancer. The best treatment medicine has come up with involves mutilation. Or the injection of poison. Or both. Prevention? Not a clue - there are correlations with smoking and genetics has a lot do with it, but there is no exercise or other regimen that reduces risk.

Except for The Pill. I don't need the same 'experts' who should have caught this decades ago to tell me what I observe on my own. We are paying for the decisions of our youth - even though we had no way of knowing.

Oh - and don't forget - as an added Bonus - we have no safe treatment options for the freak show that is menopause. "Put in a ceiling fan" is the best advice I got. Medical options? Big Pharm? Sorry - unless you want to play another round of Russian Roulette with hormones. I'll pass.

If you think I am just bitter and angry and looking for something to blame - NO SHIT. Because that's what my brain needs me to do in order to avoid a criminal spree that involves a trip to DC. And, duh, anger is a welcome emotion for My People. Fear? Not so much. And yes, I know what Master Yoda says, and he is right. But he should have said: "Take The Pill - You Should Not".

05/07/2014

Wish I were back just because I have some terrific jokes, but I don't. I do have some mediocre jokes. But first, I need to say that I have invasive lobular carcinoma = breast cancer.

I had my regular mammogram on Monday, April 28th. They called me on Wednesday to tell me there was something jinky. Went back that Friday for more photos and a sonogram. Scheduled the needle biopsy for Monday, May 5th. Got the results on Wednesday the 7th. For those of you who have been at this for a long time, you know that is really fast. Fast is good when it comes to a cancer diagnosis.

One of the mammograms they did was the new 3D imaging one where they take cross-slice photos of breast tissue. If not for that particular image, they never would have found this. Lesson? Get your fucking mammograms. I don't want to hear any bitching about it either. The old standard of waiting until you find a lump in a self-exam is OVER. Don't stop doing those, but don't rely on them exclusively when there is such amazing technology out there. Just do it.

Have to say that all the people at the Magee Imaging Center in Monroeville were great - the radiologists even took the time to show me all the images and answered questions. They said most people don't ask. I told them a good half of My People were like that - mostly the Irish ones - denial has kept those tribes going for centuries. Okay, denial and Guinness. And Jamisons. But let's not quibble.

Here is some good news for needle biopsy fans - I did NOT have to use ye olde timey Boob-Hole Table! Yay! That thing reminded me of something you'd find in somebody's basement on Game of Thrones. This time, I got to be in a chair-like thing. Ended up with three radiologists because they couldn't find the same spot the mammo and sonogram from Friday picked up. Add a couple of residents and it was a decent - and new- crowd for my stripper jokes. Changed the punch line from 'blind circus' to 'seeing eye dog convention' - not as confusing and still scores the laughs.

I know this happens to other people too - but for some reason, it seems to happen to me a lot. Middle of an exam, and the doc/tech/nurse leaves and comes back with a group and the message: "You are going to want to see this!" Ever since I saw that episode of Gray's Anatomy, I am afraid it's going to be my subsumed twin, who I ate in the womb. When I ask about that, the residents are always amazed such a thing could exist. So I tell them to chuck the books and start watching more prime time TV. You can imagine how well that goes over with the real Docs.

Turns out there is much less bleeding sitting up than there is with the boob hole table. Gravity. Who'd have guessed? This mass is on the same boob but the opposite side of the boob clock (that's how they identify where the bad cells are - last time was around 5 and this one is closer to 11). Guess I can give up my search for a comfortable strapless bra after all. HAH - gentlemen - you didn't get that one but take my word for it - a comfortable strapless bra is about as easy to find as Big Foot. The real one, not the ones from the jerky commericals.

Plus, I got one of these really cool packets that you squeeze until it makes a popping sounds and then it's an instant cold pack!! Very nice - especially because usually they tell you to use a bag of frozen peas, and if you've ever had dinner with me, you know how I hate the pea.

So it's another adventure in medicine for me. If you are one who prays, please pray that God will grant me the grace to follow this path without committing any felonies. Otherwise, please think good thoughts, light a candle, or whatever you do to send positive vibes into the universe.

I am blogging about it for two reasons: (1) It makes me feel like I have some control over the situation and helps me process the information (can you believe *I* have control issues?! I have no idea where that trait came from...); and (2) the last time, I got so many wonderful messages from people who said it took some of the crazy/spooky panic out of the whole ordeal. I mean, if I can do it, anybody can do it - I don't even like getting paper cuts (and have you ever gotten one from file folder? It burns like fire!! ;) )

Lastly - for this entry - if it has been more than a year since your last mammogram, ladies - GET IT DONE. Men - ditto for prostate exams. And ditto for colonoscopies, or whatever other unpleasant test you are supposed to be getting. Don't be a wuss. Even if you wouldn't do it for yourself, do it for your kids. And your parents. And the friends who love you. Hell, if I ever, even once, made you laugh, do it for me.

08/11/2013

I love the American Cancer Society's theme: More Birthdays! It connotes so many positive things and it gives everyone a goal to fight for.

Today, I feel compelled to talk about the opposite. I hope that means that this will reach someone who needs to read it, or needs to think about it, or needs to know they are not alone.

My Dad would have been 76 tomorrow. These days, absent a tragedy, 76 is not old. 76 is a time to relax, spend time with grandchildren (and then send them back to their parents so one can relax) and take as many naps as one wants. Naps are great. I mean, I am not saying it's worth getting older just for the naps, but it doesn't hurt.

My Dad never had those times because he was an alcoholic. Even before he died, we watched him fade away into the bottle. That may sound like a metaphor, but if you ask anyone who has an addict in their family, they will tell you it is true. Except, sometimes, for the fading part. There is nothing gentle about it. Addiction is one demanding bitch of a mistress. Once in her throes, you follow or you become monstrous - and many times, with increasing frequency as the addiction continues, the monster stays even when its mistress is sated.

We have addiction in our family, and the propensity is genetic. I worry about my kids. Hell, I worry about everyone I know. I started going to ACOA (Adult Children of Alcoholics) in my 20s, and it helped save my sanity, if not my life. There are sister organizations for family members of addicts of all kinds. If you, for one second, think it's somehow your fault, or - and here is the big one for control freaks - that there is something YOU can do to make the addict stop, get your ass to a meeting somewhere, stat. Because that kind of thinking will make you batshit crazy.

Conversely, there ARE things you can do for yourself and learning about co-dependent behavior is a massive one. Some of us, especially those with addicted parents, learn co-dependency from day one. It comes naturally to us, and leads to really destructive relationships, depression, and a generally crappy life. Re-learning and changing co-dependent behavior is a lifetime challenge, so don't kid yourself - a couple of meetings is not going to do it. But at least it is something we can do for ourselves, and there is power in that acknowledgement.

I miss my Dad. I miss having a Dad. But - and it actually causes me physical pain to say this out loud - I don't miss the man who died last year. That sounds heartless, doesn't it? I mean, it's a Commandment and everything - one of the Big Ten! I loved him, and especially at the end, I tried to honor him by following his wishes. But it broke my heart, because I watched a good man die too soon. The death certificate is immaterial - the booze killed him. And there was a good man in there, even though not everyone viewed him that way. Nothing to be done about that, except to know in my deepest soul that he and I both believe in a divine and merciful God whose love for all his children exceeds human understanding. There is a prayer that includes this about people who die: "Gone before us, marked with the sign of faith." The Priest at Dad's funeral reminded us of that several times, and I rely on it.

And I have great memories to sustain my thoughts of my Dad before - and after- his addiction started taking him from us in increments both big and small. That's the other thing about it - it's not just watching the physical body deteriorate - it's watching the person do the same. Addicts behave in ways that horrify their sober selves. I am NOT making excuses for anyone's behavior - but I hope I am helping at least one other person begin to understand the power of addiction.

There are lots of places for people to get help - addicts and family members too - start with one of the AA groups, or talk to someone at a respected rehab center. There are many, many people who do nothing but try to stop the runaway train of addiction before it crashes - because when it does, more people than just the addict are damaged.

At one of my first ACOA meetings, the discussion leader said: "There are only two endings for an addict's story - get sober or die. Addiction won't settle for anything in between."

My Dad never got sober. It cost him, and all of us, too many birthdays.

07/03/2013

This year, I have a bit of a different outlook on my country. As those of you who know me are aware, I HATE to travel. Car, plane, bus, whatever. I loathe it.

But this year, I sucked it up and our family made the tip to one of my Motherlands - Ireland. I loved it there. Hated the trip, but it was worth it. We all loved it. In fact, we are already planning a return trip. That's how great it was - I am going to voluntarily spend the equivalent of two full days battling motion sickness and general crankiness - just to return.

Ireland is amazing - it's clean, and the scenery is so beautifully varied that it defies logic. And I have to say, I felt a true connection to the land - especially on the coast in Connemara. I have roots there, and my entire being knew it on contact.

But this is about America - or The States - as many abroad call it. I have to say I am not proud of my country of birth these days. Sure there are tremendous exceptions - the Supremes delivered a mixed bag in their last session, but two great strides forward for civil rights for the LGBT community helped take the sting out of the Voting Rights disaster. A rant for another time.

I am not proud that, unlike other countries, we are embracing fracking and other environmentally dangerous activities for money. I don't care whether you are for it or against it - it is going to cause long-term damage to our water supply and to the stability of our land. But apparently our current national motto is a Profit > Risk analysis. Remember ye olde Cost-Benefit Analyis? Bye bye. Whatever makes the gold makes the rules.

I am not proud that, unlike other countries, we spend obscene amounts of money electing representatives who end up representing their own egos and self interests, instead of The People.

I am not proud that we no longer have what we used to call an Expectation of Privacy. It seems almost quaint now. My kids don't even understand the concept. They just assume everything is accessible.

I am not proud that our government is not functioning. It doesn't matter which party you identify with - and frankly, on some issues, it's hard to tell them apart. When our legislative and executive branches have bullshitted their way to a complete standoff, the system has failed. It's up to We the People to make sure the damage is not irreparable. But that is yet another rant for another day.

I am not proud that we are seen by many other countries as egotistical and self-centered, despite the fact that we pour our own resources into many other countries to help them. We don't get a thank you - we get effigies. And I am certianly not proud that we are still fighting wars we had no business starting. Do I even need to identify who is to blame on that one? ;)

Still, I came home and I was glad to come home. Because my family is here. My friends are here. And ultimately, my freedom is here. Did you know that we are one of the few countries in the world that actually have an enforceable Bill of Rights? Start paying attention and you will hear story after story of people in other countries who disappear into the prison system and cannot seem to get out. (Oh wait - Gitmo - shame on us for that one.) Prompt hearings and bail? Not guaranteed. Phone calls and Counsel? Not everywhere.

In fact, one of my greatest fears abroad was that I was going to make some kind of wisecrack and end up in prison. That was my mantra every time I was tempted to mix it up with someone - "Two words: Belfast. Prison." I've seen the movies. I know what goes on there. It's like the Hotel California, but without the sex, drugs and other fun excesses. You can check out any time you like, but you can never leave. I know this sounds psychotic on my part. Too bad. It happens and I was determined not to become some Lifetime Movie plot. I mean, who would play me?

Our country is so young - all you need to do is take a look at the architecture in other countries - hell - most of them have stone walls that were already ancient before our country was even born. Our kids pointed out that we do have an ancient history of our own - the Native American history. Except we went out of our way to destroy it. Something else I am not proud of and hope to find a way to help on that score.

So we need to continue to grow up. We need to pull it together and act like a grown-up society, not one run by multiple asshats who are more concerned with their own hubris and financial statements than the welfare of our Nation. We need a free press that actually reports the real truth, rather than helping to manufacture dreck masquerading as news. We need to fully embrace equal rights for everyone and stop labeling people based on our own fears - even Yoda knows how that works.

We need to remember that our work as a United States is just beginning - we need some of that 'when the going gets tough' attitude that we seem to apply only to sports. We need to snap out of the complacency that makes us feel as if bitching on Facebook or over a beer is the equivalent of working toward a solution.

It's exhausting just thinking about it, isn't it? So was the fight among our founding fathers just to write the Declaration of Independence. And the war that followed. And drafting the Constitution - which is still a living document. And all the other wars our families fought to get us to this point. You don't get to be the greatest nation in the world by sitting on your ass and bitching about it. I fear that's what our generation is doing, and we need to snap out of it.

But first, let's take a day off and enjoy cookouts and fireworks and family and friends. Because even if we didn't earn it, there are men and women who did - so just remember to honor them while you celebrate. And then figure out what you can do to help.

Oh! One more thing. If you haven't read the Declaration of Independence lately, do it.

04/29/2012

This one has been percolating for a long time, and I need to start writing again, so here we go.

If you are here for a discussion about abortion, forget it. I for one am sick and tired of the emotionally-charged issue of abortion eclipsing the entire concept of rights and life. As if life is more precious in utero than it is on terra firma.

I want to talk about your rights at the end of your life, not the beginning. I have some experience here - not on a battlefield. At home. Many people would rather come home to die, and if your family has the resources (personal, emotional, financial) to facilitate that wish, you should try.

But the most important thing about the end of life is the right to make your own decisions about how you want your body to be treated.

The death of a family member is awful. There is no getting around it. Even when one's theology (like mine) believes that eternal life is the miracle we celebrate our entire lives, the physical body's last breath is still a shock.

The only thing that made it bearable for my family - and we are two generations into this cycle during my lifetime - is that our loved ones made their wishes known ahead of time. At a time when they were cogent and rational, and in control.

Maybe there are some of you out there who don't have any control issues. Bless you. My genes run rampant with them - on both sides. Why do you think the Irish and the Italians party so hard?

No one can control their time of death - but you can control the way you die, and believe me when I tell you, it may be one of the only things that keeps your surviving family and friends sane. That and Hospice (VNA's Hospice Program is a gift from God - no kidding - and if you have the means, you should support them.)

The way you do this - the way you give the greatest gift to your family - is to create a Living Will. They are also called Health Care Directives. If you want a gentle, less legal one, go to Five Wishes: http://www.agingwithdignity.org/five-wishes.php

That particular website allows you to print out a document - be sure to check for your state of residence to see if there is anything special you need to do. Otherwise, google Living Will and [your state/country] and you will find tons of examples. You do not need to pay a lawyer to accomplish this - although if you are doing estate planning, a good lawyer will make you do one as part of the process.

As most of you know, my Dad died this month. To say that my Dad had control issues would be akin to saying the sun is kind of hot if you get too close. Most of his friends can tell you what he wanted at the end of his life on earth (he wasn't a shy guy, either). When he fell last summer, we talked a lot about what he wanted when he died. He was very clear from the beginning. I knew exactly what he wanted - and more importantly - what he did not want. I did not necessarily agree with him (another shocker) but I understood. He completed all the necessary legal documents to formalize his wishes.

When the time came, it was much harder to follow his directions than I thought. And it wasn't because we butted heads from the time I could talk. It was because I didn't want him to die. I wanted him here, to drive us all crazy, for a little longer.

The staff at Shadyside's CICU were wonderful. They supported his wishes and my duty to uphold them. (Except for one surgeon - yes, I get that they cut to heal but when the patient doesn't want that - back the hell off the family - it's hard enough, you jerk. I had to have him banned from the room because he was upsetting everyone, and frankly, it was hard enough for me and my siblings to stay tough without some insensitive stranger trying to guilt us into something we knew Dad did not want.)

We were able to get Dad home. We set him up in a hospital bed so he could look out his balcony windows on the town he loved so much. We would point out all the buildings he helped create, in one way or another. He recognized the very few of his oldest friends who came to say goodbye. We kept our promise to Dad that no one would see him at the end. Bad enough he wasn't in a suit and tie - but he didn't want anyone to see him unable to talk or sit up. I know we offended a lot of people by keeping them away, but that's what Dad wanted and that is what we did, and we are not going to apologize for it. If you care about someone, tell them now.

When one decides that the only measures they want at the end are relief from pain and to preserve one's own dignity, there comes a time when there is nothing to do but wait and pray. I am not going to sugar coat it - it's brutal. We found ourselves counting his breaths, then counting the seconds between breaths. I held my hand over his great heart and felt it falter and then pick up a strong beat. I held his hand and I grieved because I didn't want to lose him again.

And we waited with him. We promised he would not die alone. We promised he would not have pain. We promised we would protect him from anyone seeing him at what he considered his worst hours. We prayed and we talked to him and we assured him that he had trained all of us well enough to pick up his work. We promised him that his time for fighting was over - that we would continue to battle on his behalf so he could rest.

There are no words to describe how hard it was. If we had to settle arguments over his care, or his wishes, I never would have survived it without a total breakdown.

And in the end, the greatest way to show our love for him was to honor and respect his wishes. We could only do that because we knew exactly what those were. I found great strength in taking care of him the way he wanted, no matter how emotionally painful it became.

I am now asking you, my friends and family, to allow your loved ones to honor and love you in the same way. Nobody wants to talk about end of life issues. Tough shit. You have to do it any way, and you have to do it now, while you are healthy and rational.

It will be your last and greatest gift to your family. I know. I kept my promises. It was one of the toughest things I have ever endured, but I am proud that I didn't disappoint my Dad when he needed me most.

03/25/2012

It's been awhile since I blogged. This is because I simply cannot keep up with the bullshit. If someone had told me - even two years ago - that we would be re-fighting about birth control, I would have laughed. Now I grind my teeth and wonder WTF is going on.

Let me just say this to our Guv, and to all those other men who think they can be blase about what does or does not get shoved into a woman's body against her will.

Let's play a game. It's a variation on pin the tail on the donkey, a favorite of children's parties for decades.

It's easy because all you have to do is close your eyes - and everyone knows once you close your eyes, it doesn't matter what's done to you because you can't see anything. Kind of like when my sisters told my little brother he could go outside in his underwear, and as long as he closed his eyes, no one could see him. What followed involved a lot of crying, and it wasn't my brother's tears.

Anyway, here's how we play - you go into the "doctor's" office - which might be a closet, or an alley but what do you care - you cannot see anything any way. Then you drop your pants. No peeking! Then your "doctor" shoves things up your ass and you have to guess what they are before they are removed.

Afterwards, you can get your prescription for hard-on meds, or the results of your prostate exam, or your blood pressure reading, or any diagnosis that might require antibiotics, or painkillers, or any other non-OTC meds. I mean - if you are dumb enough to let yourself get sick, then you should be willing to take one (or more) for the social order if you want to get well. If you had just abstained from things that someone else knows are bad for you, you wouldn't be in this, uh, position in the first place.

Who is voting for these creatures?

I thought the civil rights challenge of my generation was supposed to be LGBT equality. Enough with the homophobia, people. Get over it. Time has illustrated that your house on the culdesac is safe from marauding bands of gay banditos in colorful minivans with the sole intent of ruining your marriage. And for that fabulous visual, we thank you, Lewis Black.

Instead, there is a group of people who seem bent on setting women's rights - and all civil rights - back about a century. And here is the scary part - other people appear to be listening to them! Is it selective blindness or deafness? Is it ignorance? My favorites are the ones who claim to be constitutionalists. Good grief - one of the primary purposes of our independence was to be sure our rights rested with the People - not the federal government. Not even Jefferson or Franklin - who were well-known fans of inserting things at every opportunity - would be able to make sense of this kind of crazy.

Finally, let me just say something about the position of "Right to Life". Because there seems to be some real confusion about what this means these days. If, by right to life, your vigilance ends when a human exits its mother's uterus, then you are missing one helluva chunk of the "life" part.

Abortion is a heartbreaking issue. Nobody gets up one day and says - hey, I think I will go about getting myself an unwanted pregnancy so I can have my reproductive system ripped up, along with my emotional health. Most women who have to have medical assistance to end a pregnancy do so with great sorrow. Did you know that if you have a miscarriage - through no fault of your own - and within the sacred bonds of marriage - even if you only had sex in order to have kids and you didn't even enjoy it - you have to have a procedure to remove the balance of the tissue before it becomes necrotic and causes an infection that could render you sterile. This procedure, under most of these proposed statutes, is considered an abortion.

If your baby dies in utero - and this happens - can you imagine the nightmare of this? If this horror visits your house, you need to have a procedure to remove the fetus- you know - the baby for whom you just finished painting the nursery. The baby you wanted more than anything. This is also considered an abortion, and you can now double-down on the trauma by having to hear about how you are a baby-killer, complete with video.

And if you are raped, and you want to be sure that there are no permanent injuries to your reproductive system, or assure that you did not acquire some kind of disease, you say YES when the doctor asks you if you want to have a similar procedure. This is also considered "murder" and therefore verboten according to these self-righteous asshats.

I would like to have about five minutes alone with anyone who thinks any of this makes any damn sense. But first, they need to spend some time with women who have endured multiple miscarriages, or lost babies in utero, or survived a rape and still get out of bed every day. I know all these women and they would be happy to speak with you.

And then, if you still think any of these laws are appropriate, we are going to play my new game. Would you like this blindfold on first?